Thursday, October 3, 2013

Cranky

Okay, so let's set the record straight, yesterday I was being overly optimistic.

I was also still higher than a kite.

Which is why it took me until 1pm to finally call the doctor and ask for some pain medication.

True to form, no one called me back.

So then I called the after hours number and spoke to a nurse who showed no record of my phone call earlier in the day. Meaning, the nurse who took my call did nothing with it. I ended up talking to some useless GI doc on call. Naturally, they couldn't do jack for me because they hadn't seen me.

We started to have the 'you should go to the ER' conversation and then the line went dead.

It's almost funny at this point. Only it hurts to laugh. Or breathe. My stomach is majorly distended because, I believe, my digestion has shut down again.

(And no, it's not gas pain from the ERCP, it's brand new distension.)

All I want is whatever the closest equivalent is to Motrin when you can't take Advil after surgery. Tylenol is not enough.

I don't know that I have pancreatitis with a capitol P or anything. Clearly things are aggravated. Yes, I am worse off than I was going into the ERCP, but I doubt it's serious. At least that's my impression based on my pancreatitis experience to date. I wouldn't go to the ER for it, not unless I started vomiting or something.

It would just be a lot more livable if I could control the pain better. My go-tos with all this have been Advil alternated with Tylenol and I've lost my mainstay, the Advil, due to the ERCP.

That being said, I'm not sure I would take a narcotic. I hate being loopy. Hate it. Aside from lacking the palate for booze, this is the other main reason I never drank, I don't like being out of it. Just look at this blog, which is pretty much dedicated to whining about how much I hate loopiness.

If there's no non narcotic option, then I'll suck it up, but I deserve the chance to have that conversation and not be blown off.

So since I'm cranky and all that, I finally called the Patient Ombudsman. That won't stop me from being in pain, but maybe I can spread the wealth. If GI people would have bothered to listen to me* or return calls, I wouldn't have to deal with this.

*Honestly, forget me saying "I'm in pain" and just go off my behavior. What patient have they seen wake up from general anesthesia and immediately lurch into a sitting forward posture while holding the right side of their stomach even though they are barely conscious? If you're a GI doc, how do you miss that? I saw every other patient in that room, they were all resting quietly, awake and alert. Nobody was rocking back and forth, moaning in pain except me. How did I not register as having a different experience?

May karma bequeath them with the same medical care I've received.

In spades.

And let's hope I see some relief today. This nightmare has to end sometime, right?

Support a Patient

Lost in the Desert

Patient Cliff Notes

I'm categorized as a severe persistent asthmatic* and I have a history of HPA axis suppression due to steroids used to treat the asthma.

Doctors miss the HPA axis suppression every time and actively fight me on it. I've had am cortisols of 1 and 6 and ACTH of less than 5, yet the doctors still can't get on board. The medical myopia and general lack of adrenal knowledge is horrifying.

How did I ever get diagnosed? I took premed classes for 2 years (during a health upswing) and figured it out.

I thought since previous rounds of suppression have been so well documented, I wouldn't have a problem again. I was wrong.

I've been fighting the current round of Secondary Adrenal Insufficiency since March 2010. It has eviscerated my ability to work and to function as a normal human being. Which sucks since I have a toddler who just wants her momma to play with her.

*eh... I bet it'll go back to moderate persistent, once the excitement of last year's hospitalization dies down.

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